Proper endometriosis care is incredibly hard to access; misinformation about the disease, both in medicine and in the mainstream media, is one of the most significant barriers.
One in ten people assigned female at birth will be diagnosed with endometriosis, a chronic health condition that can cause pain, fatigue, organ dysfunction, and infertility. Proper care for endometriosis patients is elusive; misogyny, racism, and transphobia in medicine account for a systemic disbelief of pain that leads to delayed diagnoses and insufficient treatment, not to mention medical trauma. When patients do finally find the specialized care that this disease requires, they’re met with the reality that it is too expensive and not widely available.
Having endometriosis means becoming an expert in your own condition. It means late nights spent reading medical journal articles and scouring online support groups for answers. One specialist told us that endometriosis patients “know more than most gynecologists” when it comes to the disease.
So let’s debunk some of the most common endometriosis myths.
It is not the same as the tissue that lines the uterus
One of the most common misconceptions about endometriosis is that it is misplaced uterine tissue. But in endometriosis, tissue similar to the tissue that lines the uterus grows elsewhere in the body. Endometriosis tissue is pathologically distinct from the endometrial tissue lining the uterus; some experts believe it can grow its own blood vessels and produce its own estrogen supply. This might seem like a granular distinction, but it’s actually critical when it comes to care: It explains why birth control and hysterectomies don’t treat the disease. Which brings us to our next endo myth …
A hysterectomy is not a cure for endometriosis (neither is pregnancy or menopause)
Doctors frequently tell patients with endometriosis that a hysterectomy will solve their pain. It won’t. By definition, endometriosis grows outside the uterus, and as we’ve established, it’s not the same as uterine tissue. That means it can continue to grow in a body on hormone suppression, after a hysterectomy or after the ovaries have been removed.
Doctors often tell patients their endometriosis will go away if they get pregnant or once they go through menopause, but for all the same reasons a hysterectomy doesn’t treat it, neither do these. Plenty of patients still experience endometriosis symptoms after pregnancy, menopause, and hysterectomy.
A hysterectomy is, however, a cure for adenomyosis, which is a separate condition in which disease is present in the lining of the uterus. Unlike endometriosis, which can spread, adenomyosis is contained to the uterus, and that means removing the uterus eradicates the disease. For patients who are not ready for a hysterectomy, doctors can offer a few alternatives, including a hormonal IUD or a presacral neurectomy—a procedure removing the nerves that connect pelvic pain to the brain.
Endometriosis is not just “bad periods”
You’ll often hear people discuss endometriosis in the context of painful menstruation, and it’s true that people living with endometriosis often have excruciating periods because of the hormonal component of the disease. But endometriosis is much more than that. People with endometriosis often experience pain throughout the month, sometimes every single day. And it is far worse than your worst period cramps—it’s one of the most painful things a person can experience.
Endometriosis can feel like burning or stabbing pain—some patients say it’s like having barbed wire wrapped around all their organs. It can involve excessive or erratic bleeding with your menstrual cycles, painful sex and orgasm, as well as gastrointestinal distress such as constipation, diarrhea, and vomiting, as well as urinary dysfunction like an inability to pass urine or increased urgency. Endometriosis can also cause severe fatigue and even dizziness.
It’s a progressive disease, so the longer it exists in the body, the higher the risk for organ damage and dysfunction. And many patients living with endometriosis experience infertility and pregnancy loss.
The severity of your pain doesn’t tell you the extent of your disease
Patients with relatively minimal pain can have extensive disease, and patients without extensive disease can experience severe pain. This is important to understand because when doctors find relatively little disease during surgery, patients can often feel invalidated. What’s more, many doctors use the “staging” classification for endometriosis—stage 1 through 4, with 4 being the most severe.
But experts and specialists are abandoning the staging classification because it only measures damage to reproductive organs. This means you can have extensive disease on your bladder, bowel, and other organs while having relatively minimal involvement of your reproductive organs and still be classified as a lower stage.
We don’t know for sure what causes endometriosis
Doctors often cite the “retrograde menstruation” theory: that uterine tissue during menses flows backwards up into the body and attaches itself to organs, where it bleeds and sheds every month like uterine tissue. Many experts take issue with this theory, as new research shows endometriosis can already be present in fetuses. Also pointing to a genetic cause is the fact that people related to those with endometriosis are more likely to have it. But to this day, no one knows for sure what causes endometriosis.
Endometriosis can only be diagnosed through surgery
The only way to get a definitive endometriosis diagnosis is through surgery. It’s a common misconception that tests like an ultrasound or MRI can be used to detect the disease, but this is simply not true. In some cases, disease might be visible on these scans, but it’s not unusual for endometriosis patients to have a history of normal ultrasound and MRI results only for surgery to reveal extensive disease.
It’s also possible to have disease removed during surgery and then have negative pathology. This is because it’s not a sure thing that the tissue samples sent to the lab will contain endometriosis—when endometriosis is removed from the body, some surrounding healthy tissue is often taken with it.
Think about it this way: Take a piece of paper and draw a bunch of dots on it. Now rip that piece of paper up. Chances are, some of the pieces have dots and some don’t. Sometimes negative pathology just means the pieces of paper without dots are the ones that were tested.
Surgery is not only for “severe cases”
Often, you’ll see doctors or reporters say something like, “In severe cases, endometriosis requires surgery.” But endometriosis is a progressive disease, and surgery is required to ensure the damage does not become irreparable. Doctors who suggest staving off surgery are doing a detriment to their patients by allowing the disease to become more advanced and thus harder to manage surgically.
Doctors will typically suggest hormone suppression, like continuous birth control, or heavier treatments like Lupron and medically inducing menopause, but these only mask the symptoms for some patients. Many come with a broad swath of dangerous side effects, as well. Lupron, for example, has been linked to osteoporosis.
It’s not a “white woman’s disease”
You’ll hear the statistic a lot: 1 in 10 women has endometriosis. But endometriosis can affect cis women as well as trans men and nonbinary folks. In rare cases, it’s even been found in cis men. And keep in mind that for endometriosis patients of color, access to care is even more fraught. Outdated and racist understandings about endometriosis too often meant it was labeled a white woman’s disease. Compounding that is widespread medical racism that leads to delays in diagnosis, poor pain management, and increased medical trauma.
Endometriosis also affects people of all ages. Young people often struggle to get diagnosed because some doctors wrongly believe that it can’t present in young teens. But for some, the symptoms can start even before the onset of menstruation. And as we’ve covered, it can persist past menopause and present in older people as well.
It shows up outside the pelvis
Endometriosis is often considered a reproductive illness. But the truth is endometriosis can show up on almost any organ in the body including the brain and lungs. Extrapelvic endometriosis, as it’s called, is not rare, despite the lack of awareness in the medical community.
It’s not uncommon for endometriosis to present, for example, on the diaphragm and in the thoracic cavity. Thoracic endometriosis often goes undiagnosed, though, because the symptoms like chest pain, shortness of breath, and, in some cases, lung collapse are not widely understood as indicators of endometriosis.
All endometriosis surgery isn’t created equal
Most doctors treat endometriosis using hormone suppression and ablation surgery. We’ve covered the ins and outs of hormone suppression, but let’s finish up by talking about surgery. In ablation surgery, a doctor goes in and burns the lesions. For some patients this provides temporary relief, but endometriosis is like a weed: You can burn the leaves, but unless you pull out the root it is going to continue to grow.
This is why endometriosis specialists perform excision surgery, where the disease is cut out—at the root, so to speak—decreasing the chances of a recurrence. Now, recurring disease is always possible with endometriosis, but it is far more common with ablation, which leaves behind active disease, than it is with excision.
That being said, excision is incredibly cost prohibitive, since insurers reimburse the two surgeries at the same rate, despite excision requiring significantly more skill. For this reason, specialists often operate out of network—meaning their care can cost thousands, if not tens of thousands, of dollars. Endometriosis care is not one size fits all, nor is surgery a perfect fix; years of disease can often lead to physical and mental trauma that causes persistent pain even after surgery.
Things like pelvic floor physical therapy, changes in diet, and psychotherapy can all be helpful to endometriosis patients seeking a better quality of life. At the same time, keeping up with all this is a lot of work, and it’s easy to feel like your pain is your fault for not doing everything that people tell you is necessary. But it’s OK to do what feels good for yourself. Eat the foods that taste good, have the sex that feels right, and prioritize pleasure wherever you can.